All Things Lyme Blog

Post-treatment Lyme disease syndrome is a serious problem

More than 300,000 people contract Lyme disease in the USA every year with many continuing to suffer from long-term illness. In some cases, those persistent symptoms have been dismissed by physicians as being psychosomatic, or caused by something other than Lyme disease. But now, researchers at the Johns Hopkins University School of Medicine acknowledge the existence of what is called Post-treatment Lyme Disease Syndrome (PTLDS).

by Daniel J. Cameron, MD, MPH

According to Rebman and colleagues, writing in the journal Frontiers in Medicine, PTLDS is a severe complication of Lyme disease. [1] The authors identified PTLDS using the Infectious Diseases Society of America (IDSA) proposed case definition. [2] “Briefly, this definition relies on prior physician-documented Lyme disease, treatment with standard of care antibiotics, and the development of significant fatigue, widespread musculoskeletal pain, and/or cognitive difficulties that last for a period of at least 6 months, and began within 6 months of a Lyme diagnosis and recommended treatment,” explains Rebman.

Individuals with PTLDS represent a group of patients who have been evaluated for “unexplained fatigue, pain, and neurocognitive symptoms by primary care and sub-specialty physicians,” the authors state. These patients are “highly and clinically significantly symptomatic, with poor health-related quality of life.”

According to the study findings, PTLDS can last for years. “Our cohort was a median of 3.6 years from onset of PTLDS symptoms to study enrollment, with a range of 8.3 months to 27.7 years,” states Rebman.

And, PTLDS can occur even in Lyme disease patients treated within 30 days of the onset of symptoms. “Time from illness onset to first recommended course of antibiotic treatment was a median of 30 days,” according to Rebman.

Additionally, 59% of the patients with PTLDS reported having a delay in diagnosis or an initial misdiagnosis. Risk factors for PTLDS include a delay in diagnosis and an increased severity of initial illness, including the presence of neurologic symptoms.

The authors did not address other manifestations including chronic neurologic Lyme disease [3] and neuropsychiatric Lyme disease. [4]

The Johns Hopkins study should put to rest the false narrative perpetuated by the 2006 IDSA treatment guidelines which states, “In many patients, post-treatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne co-infection.” [2]

Deborah Pagnotta

02/08/2018 (11:24 am)

The Rebman study should add great weight and further credibility to the appropriate diagnosis and treatment of PTLDS. The study stands on the shoulders of giants, the scientists and healthcare providers who steadfastly truly listened to their patients. No, the earth is not flat, you agreed, and helped us navigate a path to health. The Rehman article should be sent to all healthcare insurance carriers, and every neurologist and infectious disease specialist and primary care physician.

Dr. Daniel Cameron

02/08/2018 (8:37 pm)

02/08/2018 (9:55 pm)

while I am pleased with the conclusions….in the Lyme community this has been the conventional wisdom for 5+ years, and it concerns me as to how slowly the traditional scientists r responding to the Lyme pandemic

Barbara Cormack

02/18/2018 (4:02 pm)

This great news now I can tell my doctors that my aches and pains are not because I am getting old. I am still sick. When I talk to people I tell them I still have lyme and will live with it the rest of my life. My life dream is to wake up and have the energy to get through the day. Its not happening.

Dr. Daniel Cameron, MD, MPH, is a nationally recognized leader for his expertise in the diagnosis and treatment of Lyme disease and other tick-borne illnesses. For more than 25 years, he has been treating adolescents and adults suffering from Lyme disease.

Introduction

Dr. Daniel Cameron, MD, MPH, is a nationally recognized leader for his expertise in the diagnosis and treatment of Lyme disease and other tick-borne illnesses. For more than 30 years, he has been treating adolescents and adults suffering from Lyme disease.